THE SOUND OF waves just behind me filled my ears. My bare feet on the hot sand made me feel vaguely uncomfortable. I gently lifted them up and down, like a comical kind of marching: left, right, left, right, up and down, up and down. My arms joined in, swinging forwards and backwards in time. The twelve days of Christmas were always significant in our family story, give or take a day or two. In the demarcation of our coastal life, the things that preceded and followed our annual trip to the beach – the buying, the wrapping and unwrapping of gifts, the packing and unpacking of bags – coincided, oddly, with the re-boxing of unwanted presents and the release of our urban bodies set free by the sea.
It had been a number of years since any kind of ritual had freed my body – not since my diagnosis five years earlier with Parkinson’s disease, a diagnosis that seemed only to demarcate the end of my life – of a life – and certainly of my coastal life. After a few years of shut down – of closing off from the sun, from the sky and expansive air – I had returned, with my sister and other family members, to unwrap myself, a different sort of gift, shy, tentative, among the clusters of kids and their still unquestioning belief in their body’s autonomy and grace.
I leaned my head back and, pointing my chin up towards the sun, waited for the usual stiffness in my neck to inhibit my movement. All around me people were preparing their spots on the beach, or getting ready to walk towards the waves, some tugging at their swimmers. There were kids running with abandon, a few of them lugging boogie boards, followed by parents reminding them – with that peculiar, laidback holiday urgency – to swim between the flags, to not go out too far, to watch out for rips, for sharks, for other dangers of the deep. It had been years since I had run with abandon. Or done anything much with abandon. It had been even longer since I had dived under a wave, pushed through the turbulence beneath and powered myself up the other side, where the water was smooth and I could experience the sting of saltwater in my eyes, the texture of sand in my hair. The previous Christmas I’d been so physically weak that the smallest wave could have knocked me over. I’d spent most of the summer holiday in pain, although as usual had found a way through it. That was what I was becoming good at. Finding a way through pain.
But now the strange feeling in my body was not pain. It was something else. Unexpected. My neck felt so loose I could bend my head back with no difficulty and turn my face up to the sun. The sun. I remembered the yoga pose asana: salute to the sun. My muscles remembered it too as I brought my body back up with a smooth flowing movement and saluted the sky. I straightened up, aware of my spine softly clicking into place, adjusting itself after years of imbalance and discomfort. I stood quietly again; I could almost feel the world spinning on its axis, as if those revolutions were some kind of embrace, the centre of which was my heart. And my heart, at that moment, was flooded with relief and love.
I had returned to the beach that year not as a pilgrim, as I had no hope or belief, as others did, that miracles were possible. Despite my natural optimism, I hardly dared use the word ‘cure’. Yet, even knowing that such expansion, such out-of-body buoyancy, could be broken down into a series of logical explanations, I realised as I stood there with the wonder of the world whirling around me that my life would never be the same.
If you had asked me what was happening – both in and around my body and within the collection of brain cells that make up my neurology – I would not have been able to tell you. Even though, just over a year before that salute to the sun, I had to be pushed to the park in a wheelchair, resigned to an inevitable other reality.
Now, I was walking unaided on the beach, standing steadily on the soft sand as I slipped my top over my head, striding towards the water. I felt strong, steady, supple. It was such an unfamiliar feeling I thought I must be in some altered state. I was in some altered space. As I walked I tried to concentrate on my usual symptoms: the slow, unsteady gait, the rigid muscles in my back, the pain in my ankles, the way my head shook – the Parkinson’s symptom that bothered me the most as it was the most visible, the affliction that most obviously ‘othered’ me.
Spontaneously, I looked back over my shoulder and was surprised: I could turn my head with ease. I stopped and looked down at my feet. I was standing on the smoother, harder sand closer to the water where the last ripples of the breaking wave tickled my toes. I smiled. It felt good. A good-to-be-alive good. I faced the water, walked confidently towards the churning waves, took a deep breath and dived right in.
MY MOTHER AND grandmother used to warn me about my wild ideas. They told me that thinking too much would only cause problems: It’s better to be a clod in this world was one of my grandmother’s favourite mottos. Despite my unorthodox past, which propelled me from work in symphony and string orchestras to busking on footpaths and playing electric in bands, I had retained a seemingly unresolved sense of ambivalence about my life’s purpose and direction. And I do not think I’d ever fully cleansed myself of the remnants of Mum and Grandma’s attempts to rein me in.
That day on the beach, feeling a meditative sense of harmony and oneness with the world, when I’d momentarily transcended the struggle inside my mind and body to walk, run, dive and swim freely, inspired in me a deep sense of purpose I had never really felt before. This drive would become the ultimate antidote to the lingering acquiescence of my childhood. I would fully commit to my wild ideas, ride them like a team of untamed horses, let their energy carry me through my body’s suffering until I could transcend it. This commitment meant I would not be a ‘good’ patient in a way determined by the illness community, the healthcare professionals who directed it and the pharmaceutical companies that drive its economics. I would become an independent researcher and practitioner, in charge of, rather than a victim of, my condition. This independence would turn out to be not only a strategy of dealing with and managing my condition; it might, in itself, prolong my very sense of initiative – an attribute that was supposed to diminish as the disease progressed. No matter how tiny and incremental each change and adjustment might be, it would indicate, to me, that I was still able to walk a path of my own creation.
I would no longer accept the prevailing ideas that presented to me only one possible outcome for my condition: a gradual, inexorable progress towards paralysis and death. I would seek as much as possible to initiate my own future and recreate that feeling of harmony I experienced so powerfully that day by the sea. If I could not cure my condition – if my affliction was indeed something that needed to be cured – my exploration might uncover a process, a methodology, a feeling, even just a single idea that might mean my life could be better.
The fatigue in my body caused by Parkinson’s disease might call to me like a siren, telling me to stay seated, to not move, to surrender to the lethargy the condition brought into my very bones, but the important thing was that I would not remain sitting in a chair. From that moment on, I would reframe my experience not as a disaster, but as an adventure. I would live as an adventurer would, marking out a geography that was not only fertile with challenges, but with discovery and excitement as well.
I had witnessed – and participated in – the conventional story arc of Parkinson’s during the years I had looked after my mother, whose experience with the illness might analogously be described as a descent into hell. Witnessing my mother’s illness narrative had traumatised me – it affected my whole family – but it also gave me a template of what not to do.
My reprieve from my symptoms, which at the time seemed miraculous, only lasted a few days, but during that time I began to believe that if it was possible to be well for even a brief period, and if I understood why this phenomenon had occurred, there might be potential to recreate those circumstances for a more extended stretch of time. Doing so might also help me to demarcate the past, finally, from the many possible futures that lay ahead and step out of my mother’s story, with its genetic burdens, and fully into my own.
Obviously, I needed to understand why and how my symptoms had disappeared.
IN THE SMALL room at the corner of the house where I grew up, I sometimes pretended to be a dying swan. I would push a long, dusty mirror against the bedroom door and watch my reflection as I danced to Saint-Saëns’s famous cello solo from The Carnival of the Animals. I knew I was nothing like prima ballerinas with their exquisite bodies and perfect faces. But I had an inkling that what I lacked in outward form I could balance with the intensity of inner feeling. I may not look like a swan, but I could be one – through imagining. As I pressed rewind and play over and over on the cassette player, as I rolled my arms like fluttering swan’s wings, as I sank into and surged out of the murky water that was splashing around my bedroom, I was not really practising to be a dancer. My mother had chosen the violin for me, and no amount of pleading for dance lessons was going to change her mind. What I was doing was becoming an imaginator – an imaginer of feelings, beauty, struggle, life, hope, love and death. An imaginer of possibilities.
Later, playing with the Bolshoi Ballet on an Australian tour, I would peer up from the orchestra pit every night to see one of the company’s ageing prima ballerinas dance in a circular pool of light on the darkened stage. The Dying Swan had been created for Anna Pavlova by the choreographer Fokine, renowned for his integration of perfect limb extension, supple upright torso and upward impetus with a more earthy, whole-body drama and a kind of raw physical affect that appealed not only to the eye, but to emotions and imagination.
Fokine’s revolution was in the distant past as I played violin for the Bolshoi. This once-daring break with tradition was now part of dance’s heritage. And I noticed, too, how a ballet dancer was in some ways a more exclusive version of an orchestral player. She danced to someone else’s music, followed a choreographer’s instructions and found her own artistry by submitting to overwhelming instructions for perfection. She may have been further up the corps de ballet hierarchy, but was not allowed to decide where and when and how she moved. I no longer yearned to be that tragic swan – nor did I aspire any more to be an orchestral player. I wanted to decide how, where and when I moved myself.
When I left the orchestra and plugged my violin into giant amplifiers that pumped out volumes of sound, I was unleashed. For a while, I was the dancing violinist whirling like a dervish as I played my fiddle in the electrical storms exploding all around me.
But the imagined space I had unknowingly created in my childhood room would need to be filled out again in inexplicable ways even further into the future.
PEOPLE ARE FAMILIAR with the word ‘dopamine’. Most people are aware that dopamine is a neurotransmitter that plays a central role in how we feel and experience pleasure. It is especially understood in relation to the dopamine spike that social media users get when they are notified of an incoming message or notification. It signifies pleasure and, more specifically, the anticipation of pleasure. Uncontrolled, though, the pursuit of pleasure and its preluding anticipation can create addictions and fuel an insatiable desire for the dopamine surge. What is less known is that dopamine determines our ability to move, and that the loss of dopamine in the substantia nigra – a midbrain basal ganglia structure – is considered the principle cause of Parkinson’s disease. The symptoms of Parkinson’s appear once dopamine depletion is well advanced; by the time you are aware you have the condition, your natural supply of the chemical is thought to be permanently reduced.
With my non-scientific logic, I speculated that I needed to devote my days to the pursuit of pleasure and remove as much as possible things that gave me no pleasure at all.
Discovering what gave me pleasure – in all aspects of my life – became part of my therapeutic program. Here I was, learning like a child to recognise what pleased me, to understand what it felt like to anticipate pleasure. What did I love to do? What made me feel alive? What gave me goosebumps? What did I look forward to? And how could I rebuild my life around these things so they functioned not only as a protector against stress, but as active dopamine generators? This whole-body project could become completely overwhelming if I did not break it down.
A MONTH AFTER returning from the beach I joined a dance class called NIA, offered for free at a neighbourhood centre in Brisbane. NIA – or Non-Impact Aerobics – is advertised as a gentle and rhythmic form of exercise, a description that appealed to me, especially as one of the most difficult symptoms of my Parkinson’s to manage is the intense physical pain that, at times, I felt throughout my body.
The class was led by a buoyant, agile woman called Sophie who utilised an appealing playlist of songs and instrumentals that leaned strongly into rhythms and beats that naturally propelled listeners to move their bodies.
I felt shy and self-conscious as the class progressed, restricted by my unsteady balance and weak ankles. Still, although I stayed in a chair at the back for most of the class, I attended again the following week, expecting to sit in the same chair and wave my arms gracelessly. Which I did, that week and the following. But slowly I made it out of the chair and finally participated in an entire class.
Whatever progress I was making was incremental, but I was improving. Towards the end of the term, something surprising happened. The second track started; I closed my eyes and breathed deeply. Then, without consciously willing myself out of the chair, I was on the floor, following the choreography, my arms above my head, undulating my hips, rolling my wrists, flexing my ankles, feeling my chest fill with energy. What was pushing me around the floor? I had little time to wonder; I was simply being a dancer.
I waited for the inevitable collapse, but it didn’t come – at least not when I expected it. The music seemed to physically fill me, as if I had been a deflated balloon that an unseen force was pumping full of air, creating space around my brain cells, creating space around my constricted muscles, creating space in my imagination, dragging from my body’s memory, perhaps, all the times I had imagined doing something, being something, which I had no capacity to actually do or be.
‘You looked inspired,’ Sophie said to me as I was leaving.
‘I don’t know where that came from,’ I replied, hobbling towards her. ‘I could hardly walk when I got here.’
She smiled. ‘It is my privilege to see your inner child enjoy the freedom of the dance.’
Was it that simple? Was it just about unlocking a natural freedom and innocence and letting go of a belief about not being able to dance? Could inspiration really have such a dramatic effect on my body’s capabilities? And, conversely, could a lack of inspiration debilitate me to the same extent? What about the connection between music and my sudden burst of function? Over the months I attended NIA I noticed one very specific thing. If there was music that I loved, music that made my skin shiver and stretch across my muscles and bones, I could dance. This music seemed to fill me with energy and ability – whereas when the music did not inspire, I could hardly move my legs or arms. They felt heavy and immobile, as if I was trying to dance in mud.
MY NEUROLOGIST, DANIEL, told me once that he knew what imagination looked like. He has seen brain cells dance. He’s watched them vibrate and quiver. This dancing brain belonged to a patient whose skull he had just opened. The man was lying fully conscious on the operating table as Daniel asked him to imagine himself walking. The surgical procedure, called deep brain stimulation, involved implanting electrodes in certain areas of the brain to regulate or boost chemicals, like dopamine and serotonin, to improve movement disorders that affect, in particular, walking, running and dancing.
Joy Nation is a reiki master who has managed multiple sclerosis without drugs for more than fifteen years. She’s used reiki and meditation – and she also asks her clients with Parkinson’s disease to imagine themselves walking while she is giving them treatment. If their mind can hold itself in that imaginative – imagining – state, she told me, their walking improves. The body will follow where the brain goes. When distracting, extraneous thoughts interfere with this imagined state, the old problems return.
Sometimes I imagined the two of them, the professor and the reiki master, working side by side, asking their patients to use their imaginations to guide them towards recovery. And though I have experienced their ideological differences personally (having worked with both), at times I do not see much separating them. At some point they coalesce – and it is imagining that makes this coalescence happen.
The ability to visualise and to hold that visualisation for prolonged periods of time, to commit to the imagining even after you are off the reiki table, is the key to improvement.
The changes that might happen with energy healings such as reiki and meditation are subtle and take place over time. They also depend on the collaboration between the type of healing and the person doing the healing. Chemical-based medication certainly works faster – and is initially more efficient – but that efficacy gradually decreases over time, and the side effects of drugs can eventually be more debilitating than the condition they are designed to relieve. But just as it might take decades of patient practice for a violinist to master the instrument, it might take as long to recalibrate first the mind and then the brain’s cellular structure. No one expects to go to a violin professor and learn how to play after one lesson. Yet we expect to be made well quickly – and for it to be done while we passively trust that the medications will work, or wait without hope for the ‘inevitable’ decline to occur – without having to make any kind of commitment ourselves to regular practice. But in the case of Parkinson’s disease, the most popular medications are those that comprise the drug combination carbidopa-levodopa, which only hide what is really going on; they have no curative effect at all – and in many ways rob a body of its truth. So we are left with having to do the work – the creative work, the imaginative work – ourselves.
While reiki operates with an energy invisible to the naked eye, Daniel has given me another clue regarding the connectivity between his scientific world and the invisible world of energy and inspiration – a world that has always felt more comfortable to me than the drab corridors of hospitals and clinics.
DANIEL WAS NOT my first neurologist. I tried two others before deciding to consult with him regularly. One had defiantly diagnosed me within five minutes of meeting me, almost chasing me out of her consulting room as I ran, crying, into the corridor. Another, who worked in the less lucrative public health system, had returned an inconclusive ‘idiopathic’ verdict, which meant I could or could not have Parkinson’s, and if I did it would be of unknown cause. It was the kind of unknowing I could live with, I thought: open-ended, inconclusive and full of potential.
Yet, even after ‘committing’ in person to entrusting Daniel with my Parkinson’s experience, I had stayed away from his offices and his row of bright, smiling office assistants for another year, sticking my head in the sand, as do many Parkinson’s neophytes, thinking that if I kept doing what I always did I could outpace the shadows that were even then beginning to wear me down. When I finally returned to his rooms, I was sheepish; he was kind.
I thought we’d lost you, he smiled gently.
I didn’t quite know what that meant. His official title was consulting neurologist, so I guess I visited Daniel to ask questions about the unknowable parts of my brain – hoping, I suppose, not so much for what was concrete but for imagery – and the imaginary – to make my soul vibrate.
And suddenly there he was, performing that familiar perfunctory scan of my body and general physicality as I walked the short distance between the waiting room and his office, presumably checking my balance and gait, but apart from a dutiful chat about how things were going there never seemed to be a chance to establish any kind of authentic connection.
Now, my experience with complementary medicine had perhaps given me an impossible-to-realise expectation that we might become, if not exactly friends, at least collaborators in this Parkinson’s disease experience. I was determined to disrupt the pattern we had established and open up a new pathway of communication, to make our interaction seem less abstract – kinder, perhaps.
Daniel ushered me towards his room. I sat down opposite him and put a book of my artwork on the desk.
He seemed curious. ‘What have you got there?’
‘Just some little things I’ve been working on.’
I handed him the book, and he flicked through, casually at first, then more attentively, landing on a particular page here and there. Once or twice he looked across at me, then back to my artwork.
‘You did these?’ He smiled and turned back to his flicking.
I nodded. I looked across at the pages he was looking at, the various faces of the women I had drawn since my diagnosis: the clustering of flowers around their skulls, the glint of light in their eyes. I felt calmer knowing they were there, as if somehow a group of friends had come into the room with me.
He leant back in his chair and stared up towards the ceiling for a few moments, then said: ‘What we are trying to encourage in our patients is a feeling of harmony with the world around them.’
I was surprised. Shocked, even.
‘You mean as an alternative to drugs?’ I asked, after a lengthy pause.
‘Not necessarily. A lot of people couldn’t function without the meds. They need them – at least as a starting point. But what we really have to do is eliminate the white noise that impedes the flow of energy in people’s brains.’
I knew that white noise. Sometimes, in the early days after my diagnosis, it was deafening, when fear of – and for – my future could paralyse me. It was made up of all the extraneous thoughts, the stress, the anxiety, the self-talk, the desperate criticism that – all together – piled on the pressure until I could literally feel my neurological system wearing itself out. When eventually my energy was able to move purely and freely, then my condition improved dramatically.
‘Have you heard of Taoism?’ he asked me.
I told him sheepishly: ‘Most days I study the way of Tao by consulting The I Ching.’ I did not expect to be discussing ancient Chinese spiritual philosophy with my neurologist. But there were more points of convergence than I realised.
This was the first time I had seen him since that day on the beach and the subsequent cessation of my symptoms. I told him what had happened, how I had felt, and I went further down the way he had opened for me by mentioning Taoism.
‘I think what happened to me that day on the beach was about being in the flow – with no white noise – and sensing no separation between me and the world around me. It was like I stepped out of my internal pathology, the way my brain had learnt to work, and somehow caught a ride on a slipstream of pure and vital energy… I was filled with nothing but inspiration and love. In harmony with what was around me.’
He did not answer directly, but instead picked up the album and flicked through the pictures.
He looked at them and then at me. ‘Are these for sale?’
‘Sure,’ I told him, laughing. ‘They are just simple things.’
‘I actually think they are really clever.’
‘You see the flowers around the top of the head…that’s my brain on dopamine,’ I laughed. ‘And those pictures with all the flowers around the skull, that’s the love flowing around my brain when I’m in that creative state.’
He smiled. ‘Like I said, clever.’
‘They are actually unbelievably simple.’ I laughed again.
I was waiting for him to comment on my experience on the beach. But he stood up and moved towards the door.
‘It’s what we call a drug holiday,’ he said.
I raised my eyebrows, questioning.
‘Sometimes people can go four or five days without their meds. It’s more common than you might think.’ He smiled, not unkindly; he knew he was deflating my enthusiasm, my belief that something extra had in fact happened. But I did not think that his prosaic explanation precluded other possibilities. I was there, in my body, at the time. Two things could co-exist – my own experience of the event alongside his observational analysis. I could work with that symbiosis. What I would not do was privilege his opinion over my experience. I did not think my body was a predictable machine. Or that its potential for marvellous things was over. Nothing I had experienced or observed had changed such views. And while I did benefit from the drugs that were available to help boost the dopamine in my brain, I knew they were only short-term solutions.
I also did not believe that the brain, the mind, or the system of thinking and way of living that had contributed to a dysfunction like Parkinson’s disease was necessarily the best – or only – hope of finding its cure. A scientist will rarely suggest ‘be true to yourself’ as a pathway to health, and I do not think I have ever heard a specialist utter the phrase: ‘Love yourself.’ Or ‘Take care of your brain.’ My life may have been completely different if health professionals had been fluent in the language of attention and love, of meaning and intent. But philosophical language that points to other possible therapeutic pathways is hardly ever available to the mainstream doctor or scientist.
And yet there we had been, Daniel and I, discussing Taoism and flow and harmony with the universe. Perhaps our discussion was a clever pivot on his part in order to talk about things using language and concepts with which I felt comfortable. Then again, perhaps the place where art and science converged was where we both needed to go – the professor and the musician – to create hybrid understandings and languages that enabled us to articulate experience in new and imaginative ways. To generously honour what we knew to be true and admit, humbly, what we did not.
AT FIRST IT was just a sway. A hardly discernible movement. I was standing in the middle of my loungeroom while David Bowie sang. The night of our first vocal communion occurred long before that transcendent moment on the beach. My ambition was humble then, as it still is now: to do nothing more than hold my balance. Then perhaps to stand on one leg, and then on the other. The NIA classes had helped with that. But usually by dinnertime I was tired and less steady on my feet. I felt like a tree bending slightly in a breeze rather than in a wild wind, but still, I was moving in the way that I could.
It was the first time I had danced at home since my diagnosis – the first time since I was a girl that I had transformed my room into a dance floor. Only this time, I did not have to shut my door. My flat may have been small, but every centimetre of it was mine, available for me to stretch and expand and flow, to feel that harmony with the world around me.
That first night I only moved to one song – and carefully, in case I fell over. I planted my feet on the floor, a few centimetres apart, and did some loose rotations, letting my hands tap each hip as I twisted. When I was not keeping my eyes on the floor, I watched David Bowie sing on YouTube, a live performance filmed in the later years of his life when he seemed filled with genuine bliss whenever he sang.
Now it was as if my young girl’s body reached into its future to tap me on the shoulder and remind me of what was possible; as if my teenage self had conjured up all that potential so that now I would understand there was a way to move forward, that I was not stuck – that it did not matter how I moved, or what I looked like when I moved. What mattered was how I felt as I moved.
And, just as I had wished all those years ago, a dying swan on her final, fragile fluttering, I could still decide how, when and where I moved – from the inside out – propelled by imagining.